Posted by: mads04 | November 29, 2015

Mind games: the placebo effect.

Placebo effect: Also called the placebo response. A remarkable phenomenon in which a placebo — a fake treatment, an inactive substance like sugar, distilled water, or saline solution — can sometimes improve a patient’s condition simply because the person has the expectation that it will be helpful.

The placebo effect is instilled into us from a very early age and most of us don’t realise it. When we had a fall and grazed our knee as a kid, our mums cleaned the cut and put a plaster on it. Then what did she say? “You’ll be fine now the magic plaster will make it better.” As a rule mum knows best so we believed her. The plaster has done nothing to make it better but because our mum has mentioned “magic” and “it’s better” were not crying anymore. Honestly, our house as a kid kept band-aid in business, I had more cuts than Rambo! 

We take the placebo effect into adulthood aswell. How many times do we see professional sportsmen/women get injured on the pitch, the physio runs on, gets the magic water out, applies it, tells them they’re OK and the player gets up and carries on. Magic? No it’s mind games. The reason I’m going on about the placebo effect is because I’ve experienced it more than once whilst living with MND.

Just after I was diagnosed I was fortunate enough to qualify for a new drugs trial called dexpramipexole, try saying that after a few pints! It was a placebo trial which means half of us on the trial were on the placebo and the other half on the trial drug. When you’re diagnosed with MND you’re given two hopes, no hope and Bob Hope! So a trial represented hope to me. I’d only just been diagnosed so I didn’t have a clue how it all worked but after speaking to my clinical trials nurses, who were absolutely bang on with me from day one.I felt privileged to be involved and I was positive from the start. The trial was meant to last 12 months but was extended to 18 months. The trial consisted of weekly appointments for a few months then monthly appointments of giving blood, lung function tests and sniff tests etc. At the end of the trial all the data from it went back to America and we had to wait to see if we were on the real drug or a placebo. I was convinced I was on dexpramipexole. I felt OK during that 18 month period. I was jumping out of planes(obviously with a fuckin parachute on). I was running marathons, recording albums, doing gigs, I even went in for my boxing coaches license. I can’t even put me dukes up now never mind slip a punch!  About 6 months after the trial, I found out I was on the placebo. In a way I was glad because I knew then that my mental state was strong as fuck! The placebo effect had done its job with me. 

There were 102 patients on the trial worldwide. I was on it with 2 men from the northwest of England. Unfortunately they’ve both lost their battle with MND. 

The second trial I was on was tiramestiv. It was a muscle strength drug which hopefully might slow MND down a bit. Again it was a placebo trial worldwide. At you’re first appointment you were given the real drug for a week because it basically sent you off your cake for a few days, so if you went straight into the placebo trial you would definitely know if you were on the real drug because you’d be constantly listening to Pink Floyd and watching Cheech and Chong movies! Anyway after a week of being fuckin smashed we all started the real trial. At the time I was losing weight and during the 3 months that the trial lasted I was eating like a horse which is a good thing for someone with MND. MND wastes away your muscles so the more fat we gain the better. I’m a proper fuckin salad dodger now!  I was convinced it was the drug that was giving me this crazy appetite. At every appointment during the trial we had to perform strength tests which would include gripping a machine with you’re hand and squeezing as hard as you can to measure if you’re getting stronger. During the three months my strength in my hands was improving. I used to have arms like Popeye now I’ve got arms like Olive Oil, so when I used to walk into the clinical trial department, I’d get my guns out and say “Look at the fuckin arms on me girls” to my nurses. The nurses were always up for a laugh and knew it would be a lively day when I was in. After the trial ended, again we had to wait a few months to find out if we were on placebo or the tiramestiv. I was convinced I was on the drug. I’d gained weight, I was feeling strong and I was actually winning arm wrestling contests with my 4 year old daughter again!! So when my nurses told me I was on the placebo tablet, everyone was surprised to say the least. I’d well and truly been placebo’d again.

We should use the placebo effect more in the world of MND. The brain is our most powerful tool. If we convince ourselves were not well we inevitably become sick, but if we tell ourselves were fine, nine times out of ten we’ll be OK. I’m convinced I’ve got this far with MND with a positive mindset. I’ve done things with MND that I would never have dreamt of before I was diagnosed. Strange but true. 

You’re brain can achieve amazing things, make sure you use it wisely. 

Just a quick point about the difference between my clinical trial nurses and the hierarchy at the MND association, who continually refuse to promote my blogs. The nurses are completely open minded about MND. They have to be in the job they are in. They print and give my blogs out to people not just with MND but medical professionals and people who have other terminal and life threatening illnesses. They have told me some patients have found strength and encouragement from my writing. Job done for me. My nurses gave me hope when there was none to be given. I’m forever grateful to them and will always hold them in the highest regard. Working class heroes. X

IMG_1597IMG_1596
These nurses don’t like the spotlight and they will be looking at these pictures saying “Look at the head on me? I’m gonna kill you Mark!” Sorry girls ha ha X 

This is a video we filmed on encouraging people to take part in clinical trials. I actually watched this saying “Look at the head on me.” Revenge is sweet girls!!  

Please keep supporting the MND community and MND awareness. This illness is seriously underfunded for research and quality of life. MND is killing more and more people every year but with the help and support of genuine people like my nurses, hopefully a cure can be found. 

Enjoy life. 

To be continued…

Mark 

Ps. Since my last blog we’ve lost another couple of MND Warriors who I connected with via Twitter. RIP Ali X RIP Lena X my thoughts are with you’re family and friends.

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Responses

  1. Feck mark that is fab blog
    But did you have to put my messy desk on show. Keep fighting mark our MND warrior xxx

  2. Tremendous blog Mark, great read and really inspiring x

  3. Such an encouraging blog Mark. I appreciate your words. Staying positive is the only way forward. Live life.


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